Cleft-Talk: Frequently Asked Questions


Hello, and welcome to Cleft Talk!!

Cleft Talk is an email-based online support group for families and individuals whose lives have been touched by cleft lip and palate. This note is to introduce you to our community and to let you know how we operate.

First, Cleft Talk is a program of Wide Smiles. If you are not yet familiar with it, we urge you to visit the rest of our web site at:

http://www.widesmiles.org

There, you will find answers to many of your questions, particularly in the section we call Cleft Links (a table of contents is listed down the left side, at the top of our web site.) If you are a new parent or if you are pregnant now with a child that has been diagnosed to have a cleft, we strongly suggest that you go to the Outreach Section (http://www.widesmiles2.org/outreach) and take a look at the information on that page. This is the page that we distribute to brand new parents. You will find a wealth of information on that page! If you are afraid of what to expect, or you just want a little glimpse into a crystal ball, go to the Photo Gallery and take a look at our beautiful children! (http://www.widesmiles2.org/gallery)

Regardless of how much information we can put on the web site, though, nothing will ever compare with the value of been-there-done-that experience from someone who understands thoroughly where you are, because they have been there themselves. That is why Cleft Talk exists. Below are some Frequently Asked Questions regarding Cleft Talk. We encourage you to write in and introduce yourself soon so we can get to know you.

Joanne


CLEFT-TALK DISCUSSION GROUP FAQ
(Frequently Asked Questions) About this list:

Question 1: How do I address an email that I want to send to Cleft Talk?

Answer: Send mail to Cleft Talk by addressing your email to Cleft_Talk2@bmtmicro.com

Question 2: Is Cleft Talk a Yahoo mail list?

Answer: No. Cleft Talk is not a Yahoo group list. However, Cleft Talk moderation is done through a Yahoo e-mail address. This allows me to have the help of assistants in maintaining the list.

Question 3: Is Cleft Talk moderated?

Answer: Yes. Not only is Cleft Talk moderated by me and an assistant, but we are also monitored by a medical/surgical staff so that you can be assured that the information you get through Cleft Talk (and through Wide Smiles) is reliable information.

Question 4: How do I unsubscribe if I have to leave the list?

Answer: To leave Cleft Talk, simply write an email addressed to majordomo@bmtmicro.com with the following in your message field: unsubscribe cleft_talk2

Question 5: I get too many emails. Is there a digest mode for Cleft Talk?

Answer: Yes. Just send email to majordomo@bmtmicro.com with the following in your message field: digest cleft_talk2

Question 6: Can I get medical advice from Cleft Talk?

Answer: No. Cleft Talk is not a medical board. We are not doctors. For the most part, we are parents. Even if we were doctors, we have not seen your child. What we offer is the benefit of our experiences. We can tell you what worked for our own children, or what our experiences with a specific medication or procedure might have been, but we cannot treat your child over the internet, nor would we want to. The only medical advice we can feel comfortable in giving is to seek a second opinion if you are unhappy with or unsure of the treatment you or your child are getting.

Question 7: Can I discuss my child’s doctor or team on Cleft Talk?

Answer: Not by name, no. You can discuss treatment decisions. You can ask if others did the same. You can even name your doctor for the benefit of asking persons with experience with that doctor to write to you personally. However, we don’t discuss specific doctors or specific teams in open forum on Cleft Talk.

Question 8: If I am angered by something that somebody says, will I be censured?

Answer: You will not be censured unless what you write can be considered a flame. Flames are not allowed on Cleft Talk and will not be approved to go to the list. Cleft Talk is a safe place where, while you do not have to agree with everyone, we do ask that you disagree agreeably.

Question 9. Is there a Cleft Talk archive?

Answer: No, we’re sorry. Our server does not have the option of archiving Cleft Talk. For a few years, we kept old Cleft Talk digests on the web site, but it became unwieldy and was not often accessed. People don’t have a problem answering the same questions over and over again.

Question 10: Have you ever considered doing Cleft Talk like a message board, allowing members to browse through the posts and follow one thread?

Answer: We have found, over the years of our operation that the email venue works best for us. We did try a few message boards over the years and found that the personality of the list simply was not there. We’ve chosen to stick with this format.

Question 11: What are the most important rules to bear in mind as a Cleft Talk member?

Answer: The rules are simple. Don’t share medical advice, don’t name doctors or teams, and don’t flame. Otherwise, pretty much everything goes.

Question 12: What about things in my life that don’t involve the cleft? Can I share off topic things on the list?

Answer: Yes. There is a lot more to our children than the fact that they were born with a cleft, and Cleft Talk is about the whole person not just the square inch of tissue below one or both nostrils. All that we ask is that you flag off topic posts with “OT” or “Off Topic” in the subject line. This will allow others who may have limited time to click past that one, realizing that there will not be any cleft-related information in that post.

Question 13: I am not a parent. Can I still join Cleft Talk?

Answer: Yes, you are very welcome to join us. We have had grandparents, aunts and uncles, siblings, friends of the family and professionals as members of Cleft Talk. You are more than welcome to join.

Question 14: I am confused by all the acronyms on Cleft Talk. What do they all mean?

Answer: Over the years, we have kind of developed our own language here. We do have some help with them in our cleft links files on the web site at http://www.widesmiles2.org/cleftlinks/WS-669.html Basically, the most used abbreviations are the following:

CA = Cleft Affected
NCA = Not Cleft Affected
UCLP = Unilateral cleft lip and palate
BCLP = Bilateral cleft lip and palate
CT = Cleft Talk
WS = Wide Smiles
PS = Plastic surgeon
OS = Oral surgeon
DDDR = Different doctors, different rules
MJ = Mead Johnson bottles
POT = Plain Old Tylenol


Cleft Talk | Wide Smiles Main Page

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Revised: January 2004